alzheimer's disease and related disorders

89 Pages·2014·1.62 MB·English

PENNSYLVANIA
STATE PLAN FOR
ALZHEIMER’S
DISEASE AND
RELATED
DISORDERS
FEBRUARY 2014

Pennsylvania (PA) State Plan for Alzheimer's Disease and Related Disorders (ADRD):

TABLE OF CONTENTS
I. EXECUTIVE SUMMARY ............................................................................................................ 2
II. INTRODUCTION……………………………………………………………………………… .. 5
THE ALZHEIMER'S DISEASE AND RELATED DISORDERS EPIDEMIC .................................................... 5
THE NATIONAL ALZHEIMER'S PROJECT ACT (NAPA) AND THE NATIONAL PLAN............................. 6
A CALL TO ACTION BY GOVERNOR CORBETT ................................................................................... 6
III. ALZHEIMER’S DISEASE AND RELATED DISORDERS IN PENNSYLVANIA……….... 8
DEMOGRAPHICS OF ALZHEIMER’S DISEASE AND RELATED DISORDERS IN PENNSYLVANIA…….…. 8
CHALLENGES OF ALZHEIMER’S DISEASE AND RELATED DISORDERS FOR
PENNSYLVANIA…………………………………………………………………………………...... 9
CARING FOR PENNSYLVANIANS WITH ALZHEIMER’S DISEASE AND RELATED DISORDERS ………... 9
FINANCING OF CARE……………………………………………………………………………… 10
ALZHEIMER’S DISEASE AND RELATED DISORDERS RESEARCH, TECHNOLOGY,
AND DRUG DEVELOPMENT IN PENNSYLVANIA …………………………………………………... 12
IV. CRAFTING A PLAN FOR PENNSYLVANIA ......................................................................... 13
GUIDING PRINCIPLES ...................................................................................................................... 13
PLANNING PROCESS ........................................................................................................................ 15
V. RECOMMENDATIONS ............................................................................................................. 20
VI. ACTION PLAN: RECOMMENDATIONS, GOALS, AND STRATEGIES .......................... 21
RECOMMENDATION 1: Improve awareness, knowledge, and sense of urgency about medical,
social, and financial implications of ADRD across the commonwealth ....................................... 21
RECOMMENDATION 2: Due to the magnitude of the ADRD epidemic, identify and
where possible, expand financial resources to implement this plan through federal,
state, foundation, private and other innovative funding mechanisms and partnerships................. 25
RECOMMENDATION 3: Promote brain health and cognitive fitness across the life cycle
from birth onward ......................................................................................................................... 27
RECOMMENDATION 4: Provide a comprehensive continuum of ethical care and
support that responds to social and cultural diversity, with services and supports
ranging from early detection and diagnosis through end-of-life care. ......................................... 28
RECOMMENDATION 5: Enhance support for family and non-professional caregivers
and those living with ADRD ........................................................................................................ 31
RECOMMENDATION 6: Build and retain a competent, knowledgeable, ethical,
and caring workforce .................................................................................................................... 33
RECOMMENDATION 7: Promote and support novel and ongoing research to find better
and effective cures, treatments, and prevention strategies for ADRD. ......................................... 35
REFERENCES ........................................................................................................................... 37
APPENDIX A - EXECUTIVE ORDER 2013-01 .……………………………………………. 39
APPENDIX B - ABBREVIATIONS AND ACRONYMS ....................................................... 42
APPENDIX C - PENNSYLVANIA ALZHEIMER’S DISEASE PLANNING
COMMITTEE BIOGRAPHIES…………..………………………………… 43
APPENDIX D - SUMMARY OF RESOURCES FOR PERSONS WITH ADRD AND
CAREGIVERS……………………………………………………………….. 53
APPENDIX E - PENNSYLVANIA ALZHEIMER’S DISEASE PLANNING
COMMITTEE PUBLIC COMMENTS EXECUTIVE SUMMARY……... 73
APPENDIX F - ACKNOWLEDGMENTS………….…….……………………………….….. 77
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I. Executive Summary
Pennsylvania Plan for Alzheimer’s Disease and Related Disorders

Introduction
Governor Tom Corbett issued an Executive Order (Appendix A) on February 7, 2013 calling for
the creation of the Pennsylvania Alzheimer’s Disease Planning Committee (committee). The
purpose of the committee was to create, for consideration of the Governor, a comprehensive plan
for a thoughtful, integrated and cost-effective approach to address the needs of persons living
with Alzheimer’s Disease and related disorders (ADRD). Twenty- six commission members,
comprised of legislators and stakeholders, were appointed for their expertise and leadership from
across the ADRD care and research spectrum.

The Planning Process
The Secretary of the Department of Aging, chaired the committee. Legislative members included
the majority and minority chairpersons of the Aging and Youth Committee and Public Health
and Welfare Committee of the Senate, and majority and minority chairpersons of the Aging and
Older Adult Services Committee and Health Committee of the House of Representatives.

The committee began its deliberations in June 2013 in Harrisburg. This was followed by a series
of six regional public meetings across the state between July and September, and an additional
five meetings of the full committee between October, 2013 and January 2014. The committee’s
workgroups met via teleconference between July and December, crafting a set of
recommendations, goals, and strategies, which were subsequently compiled into an overall
framework for the Plan.

Public input was gathered through public meetings, an online survey and correspondence. A
total of 336 individuals shared their experiences, expertise, suggestions, and concerns, guiding
and inspiring the work of the committee and ensuring that the needs of patients and caregivers
remained at the forefront of its deliberations. Three themes emerged from the public comments:

 The experiences of persons living with ADRD and their caregivers, and the need for
additional funding to support individuals, caregivers, health care providers, home and
community-based services, long-term care, training, education, and research.
 The need to enhance awareness among the public to overcome stigma and promote the
safety of persons living with ADRD.
 The lack of access to information that would help persons with ADRD and caregivers
navigate the healthcare system and obtain legal, financial, and insurance support.
The Committee’s Charge
 Examine the needs and research the trends in the Pennsylvania Alzheimer’s population;
 Study existing resources for addressing the needs of person with ADRD, their families
and caregivers;
 Develop a strategy to mobilize the commonwealth’s response to the anticipated increase
in incidence of ADRD in Pennsylvania; and,
 Submit recommendations to the Governor.
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Examining the needs and trends in the Pennsylvania ADRD population
Pennsylvania has the fourth highest percentage of elderly population in the nation, with the
incidence of ADRD rising in line with the aging of the population. Over 400,000
Pennsylvanians are likely afflicted with ADRD, and the toll of the disease extends beyond those
affected to their families, friends, and communities. All told, one in 12 Pennsylvania families is
affected by ADRD.

Pennsylvania is not only one of the oldest states, but also one of the most rural. Rural
Pennsylvanians are, on average, older, poorer, and with greater health care needs than those in
urban areas, yet there are fewer primary care providers, nursing homes, and home and
community-based services available. Racial, ethnic, and cultural diversity is also on an upward
trend in Pennsylvania, and many of these population groups are at increased risk of developing
ADRD yet have reduced access to care.

Pennsylvanians with ADRD have increased care needs across the continuum of the disease, yet
appropriate care may not be available to all Pennsylvanians, particularly those in rural areas,
those with unique care needs based on social and cultural factors, and individuals with younger
onset ADRD. There is also a need to support caregivers.

Studying existing resources for addressing the needs of person with ADRD, their families
and caregivers
Increased care requirements come at a high cost that is borne both by the commonwealth and the
families themselves. Many resources are available to assist individuals with ADRD, their
families, and caregivers, yet accessing these resources can be challenging. The committee has
compiled an initial list of these resources (Appendix D). The committee also recommended a
series of strategies to make these resources more accessible to Pennsylvanians.
Among Pennsylvania’s resources is the presence of world-class research institutions. Potentially
ground-breaking research is conducted at Pennsylvania’s two National Institutes on Aging-
funded Alzheimer’s Disease Research Centers and at many other universities and colleges across
the state. In recent years, there has been a growing trend of building partnerships not only across
academic institutions but with pharmaceutical, diagnostic, and biotech companies as well.
Pennsylvania is thus well positioned to build upon its strong base in research and technology not
only in the pursuit of improved care and treatment for people with ADRD but as an engine for
economic development.

Developing a strategy to mobilize the commonwealth’s response to the anticipated increase
in incidence of ADRD in Pennsylvania
The committee established three workgroups to address the major issues confronting the
commonwealth: 1) Prevention and Outreach, 2) Healthcare Delivery and Workforce, and 3)
Research and Metrics. The workgroups crafted a set of recommendations, goals, and strategies,
which were subsequently compiled into seven overall recommendations. The recommendations
are listed not in order of importance but emphasize concurrent needs to build public awareness,
support individuals affected by the disease and their caregivers, educate health care providers
who provide care across the continuum of the disease, and foster research which discovers cures,
treatments, and prevention strategies.

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The committee discussed the terms dementia and ADRD. In recognition of the evolution in
diagnostic terminology used by clinicians and other care providers, the term ADRD encompasses
the wide range of disorders associated with cognitive and functional impairment, and was
thought by many members of the committee to be more respectful and less stigmatizing than the
word dementia. At the same time, the committee recognized that limited use of the word
dementia is appropriate in some cases and that raising awareness and understanding of these
disorders is the only way to truly combat stigma.

Submitting recommendations to the Governor
The committee reached consensus to recommend to the Governor the following steps:

1. Improve awareness, knowledge, and sense of urgency about medical, social, and
financial implications of Alzheimer’s disease and related disorders (ADRD) across
the commonwealth.

2. Due to the magnitude of the ADRD epidemic, identify and where possible, expand
financial resources to implement this plan through federal, state, foundation,
private and other innovative funding mechanisms and partnerships.

3. Promote brain health and cognitive fitness across the life cycle from birth onward.

4. Provide a comprehensive continuum of ethical care and support that responds to
social and cultural diversity, with services and supports ranging from early
detection and diagnosis through end-of-life care.

5. Enhance support for family and non-professional caregivers and those living with
ADRD.

6. Build and retain a competent, knowledgeable, ethical, and caring workforce.

7. Promote and support novel and ongoing research to find better and effective cures,
treatments, and prevention strategies for ADRD.

The committee recognizes that developing the Plan represents an initial step in the process of
responding effectively for Pennsylvanians living with ADRD. Government cannot accomplish
this on its own – it will require committed partnerships energy, cooperation, creativity, and hard
work of individuals, healthcare and social service providers research institutions, advocacy
organizations, and industry. The committee looks forward to the implementation of this plan.

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II. Introduction

The Alzheimer’s Disease and Related Disorders Epidemic
Alzheimer’s disease and related disorders are brain disorders that cause memory loss and other
cognitive impairments in an estimated 5.2 million Americans [1], with the number expected to
triple by 2050 [2]. These diseases are progressive, incurable, and fatal, leaving persons unable to
care for themselves and unaware of the world around them. Currently the 6th leading cause of
death in the United States and the 5th among those over the age of 65, it is the only cause of death
among the top 10 for which there is no cure and no way to prevent or slow its progression.
Moreover, as deaths from heart disease, stroke, and cancer declined between 2000 and 2010,
deaths from ADRD increased by 68 percent[1].

Between 60-70 percent of those living with a related disorder have Alzheimer's disease itself.
Other diseases that are captured under the umbrella of ADRD include Vascular Dementia,
Dementia with Lewy Bodies (DLB), Frontotemporal Lobar Degeneration (FTLD), and mixed
dementias [3]. These various disorders affect different parts of the brain, result in somewhat
different symptoms, and may follow different trajectories. In this Plan, the term ADRD
encompasses the totality of progressive neurological disorders that cause cognitive and memory
impairment, behavioral and psychiatric problems, loss of the ability to care for oneself, and
ultimately death.

Older age is the greatest risk factor for ADRD. Today, approximately 5 percent of Americans
between the ages of 65 and 74 have ADRD, but the incidence increases dramatically after about
age 74. Of those 85 years of age and older, about one-third have some form of dementia [4].
Over the coming decades, the segment of the U.S. population over age 65 is expected to increase
from about 13 percent in 2010 to 19 percent in 2030 as the baby boom generation reaches old
age [5]. With this aging of the population, the number of those with ADRD is expected to
skyrocket as well.

Younger people can also be affected. An estimated 4 percent of those diagnosed with ADRD are
under the age of 65, many of them in their 50s and 40s, and even 30s [6]. Women are more likely
than men to have ADRD, in large part because women live longer than men. Hispanics and
African Americans also have a higher incidence of ADRD [7, 8] and more severe cognitive
impairment than whites, and Hispanics also have an earlier age of onset [9]. These racial
differences may, in part, be explained by a higher incidence of other health conditions such as
cardiovascular disease and diabetes, which are more prevalent in African Americans and
Hispanics.

The monetary costs of caring for people with ADRD are expected to rise exponentially along
with the increased prevalence. In 2012, the costs of health care, long-term care, and hospice care
for people with Alzheimer’s and other forms of dementia were estimated nationally to total $200
billion, which includes $140 billion for Medicare and Medicaid [1]. A large proportion of
individuals with ADRD also have other medical conditions such as heart disease, diabetes,
chronic kidney disease, chronic obstructive pulmonary disease, cancer and neuropsychiatric
complications (e.g. psychosis, depression). The coexistence of these conditions with ADRD
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results in higher costs, more hospital and skilled nursing facility stays, and increased use of home
health care and hospice care.

In addition to the high medical costs associated with caring for people with ADRD, there are
additional costs borne by unpaid caregivers. In 2012, more than 15 million Americans provided
an estimated 17.5 billion hours of unpaid care to people with ADRD [1]. Compared to caregivers
of other older people, caregivers of people with ADRD are more likely to provide assistance with
activities of daily living such as getting in and out of bed, bathing, dressing, getting to and from
the toilet, and feeding. They also frequently must manage medications and finances and deal
with problematic behaviors. The economic value of this care has been calculated to be over $216
billion [1]. But there are other costs to caregivers, such as out-of-pocket costs and lost
productivity at work that are not accounted for in this calculation. Moreover, caregivers of
people with ADRD report high levels of both emotional and physical stress that can take a toll on
their own physical and mental health [10].

The National Alzheimer’s Project Act (NAPA) and the National Plan
In December 2010, the U.S. Congress unanimously passed the National Alzheimer's Project Act,
which was signed into law by President Obama in January 2011. The law required the U.S.
Department of Health and Human Services to craft and annually update national strategic plan to
address the ADRD epidemic and to coordinate efforts across the federal government. The law
also established an Advisory Council on Alzheimer's Research, Care and Services with both
federal and non-federal representation, including caregivers, patient advocates, health care
providers and researchers.

The first national plan to fight Alzheimer’s Disease was presented in May 2012 at the
Alzheimer's Research Summit, and was updated in 2013 [11]. The plan set forth five goals: 1)
Prevent and effectively treat Alzheimer’s Disease by 2025, 2) Optimize care quality and
efficiency, 3) Expand supports for people with Alzheimer’s Disease and their families, 4)
Enhance public awareness and engagement, and 5) Track progress and drive improvement.

The National Plan recognized that States are on the frontline of the battle against ADRD,
ensuring that care is available for those with the disease and providing resources and support for
family caregivers. Thus, the National Plan called for coordination with states across a number of
goals, including raising awareness about ADRD and cognitive health, supporting caregivers, and
developing capable and culturally competent workforces. Pennsylvania is joining other states in
developing a state specific plan to address the ADRD epidemic.

A Call to Action by Governor Corbett
In February 2013, Governor Corbett signed an Executive Order establishing the Pennsylvania
Alzheimer's Disease State Planning Committee, which was charged with developing a state plan
to address the growing ADRD epidemic in the commonwealth. The Secretary of the Department
of Aging was asked to chair the committee. Recognizing the ongoing concerns of the Legislature
and the commitment of the House Alzheimer’s Caucus, the Governor appointed the majority and
minority chairs of the Senate Aging and Youth Committee and Public Health and Welfare
Committee, and the House of Representatives Aging and Older Adult Services Committee and
Health Committee. The Governor appointed 17 additional members to the committee,
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representing persons with ADRD, caregivers, family members, representatives from the nursing
home, assisted living, personal care home, adult day-care services, home care, and hospice
industries, representatives from the medical care provider community, the statewide Alzheimer’s
Association chapters, a senior center, the Area Agencies on Aging, and the Pennsylvania
Departments of Health and Public Welfare; and AD researchers. Non-voting advisors also
provided additional expertise.

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